For many years, I worked as a Program Coordinator and Family Caregiving Consultant at the Alzheimer's Association and Del Mar Caregiver Resource Center. During that time I wrote a monthly newsletter for families taking care of loved ones with progressive incurable memory loss and dementia. Those articles are now a book, and this blog was created to share it (and any new articles I write) with all of you.

Friday, May 6, 2016

Do you know somebody who has Alzheimer’s Disease or some other type of age-related memory loss or confusion, inability to take care of themselves? This is known as dementia and, according to the Alzheimer’s Association, more than 5 million people in the United States suffer from it today.

I used to work for the Alzheimer’s Association and I know they spend a lot of time fundraising for a cure for this disease and a lot of the money goes into pharmaceutical research, which is a good thing because anyone who is dealing with this disease desperately wants and deserves a worthwhile treatment and cure! But my job (and the job I had later at Del Mar Caregiver Resource Center) was to work directly with the families, and that work led me to some deep inner questioning because I tended to hear the same three stories (or variations) over and over again.

“Grandma was perfectly all right until grandpa died.”

“Grandpa was perfectly alright until he retired and didn’t know what to do with himself anymore.”

“So and so has never been completely alright—she’s always been somewhat depressed—but now that she's living alone, things have really gone south: she has full-blown Alzheimer’s.”

I worked with hundreds of people over more than 6 years and after awhile I started to think: if this is just a physical illness with a physical cure, why am I hearing these stories so often? In recent years some people have started to research this very thing, and they think we could bat down the incidence of Alzheimer’s Disease by focussing on social solutions that might help people be less susceptible.I hope that in this post you will read something new and that it will inspire you to make a change in your life or in the life of someone you love. First, I’m going to tell you about how important this is. Then I’ll share just a little about the science related to Alzheimer’s Disease so you understand what drug researchers have been focusing on and then a very famous study that seems to contradict the science. I’ll talk about recent studies that might point to social solutions. And I’ll end with helping you think about how easy solutions like that could be and ask you to start with one simple thing I hope you’ll do with your family or friendstonight.

Let’s start with why this is important.Alzheimer’s Disease has an enormous impact on our country.

The likelihood of getting dementia goes up the older we get and, according to the latest statistics from the Alzheimer’s Association, 1 in 3 people have some kind of dementia by the time they die.

That’s scary enough but guess what?

The elderly population—who is most likely to get this illness—is the largest and fastest growing population in the United States because the Baby Boomers are just starting to hit the age when Alzheimer's Disease and other age-related dementias start to really become an issue. (According to the Alzheimer’s Association, if nothing changes, the number of people with age-related dementia is expected to triple in 34 years.)

This year, dementia is expected to cost this country 236 billion dollars. Obviously, in the future this number could be going way up!

And these statistics, of course, do not address the emotional, physical and financial toll on the families trying to take care of loved ones.

Obviously something needs to be done and there’s a lot of research being devoted to trying to solve the problem.

So let’s look at that.

The reason why so much of the research is focussed on a physical cure is because there are physical things that seem to be correlated with the disease.

As you can see from this drawing provided by Beaumont Health System and the Michigan Head and Spine Institute, which is doing some of this research, the brain of a person with Alzheimer’s Disease looks different from a healthy brain. There are unusual features—protein deposits and alterations in protein structure called plaques and tangles--that can be seen in the brains of people who died of Alzheimer's and they seem to increase the further along the disease had progressed while the people were still alive. Eventually the brain starts to atrophy and shrink, and fissures and holes start to appear. So the drug researchers want to find something that will either clear up these plaques and tangles or prevent them from occurring in the first place.

And that makes sense as far as drug research goes...but is that the best and only approach to reducing the incidence of Alzheimer's Disease and age-related dementia?In 1997 an article was published in the journal Gerontologist by researcher David Snowdon about a famous project, still going on today, that we in the Alzheimer's field call “The Nun Study.” At the time of that report Snowdon had interviewed and tested the memory and cognitive skills of 678 nuns over their lives and when they died he did an autopsy of their brains. Lots of interesting things were discovered but here’s the story I found of most interest.

One of the nuns, Sister Mary, lived to be 101 years old. She was mentally sharp and scored incredibly high on all these tests, including the last one she did just a few weeks before her death. But when they cut open her brain, they found signs of atrophy and more plaques and tangles than anyone else's they had studied up until that point. According to what had been assumed from the science, she should have had full-blown Alzheimer’s Disease but she showed none of the symptoms.

So this opens up a lot of questions about why. What they know about Sister Mary is that she was very upbeat and optimistic, she took an active interest in everything, and she seemed to be extremely social. Since then, some researchers have been focussing on those particular clues.

The Effects of Social Engagement and Life Purpose

For example, researchers at the Rush Alzheimer’s Disease Center in Chicago did a study on the effect of loneliness and social isolation on Alzheimer’s Disease that was published in the Archives of General Psychiatry in 2007. It showed that people who reported being lonely a lot of the time were twice as likely to develop the symptoms of Alzheimer’s Disease than people who did not and that the incidence of Alzheimer's was NOT related to the amount of plaques and tangles in their brains--it was correlated with a difference in how they warded off the effects of the physical changes those plaques and tangles represent.

But loneliness is not the only factor worth considering. The Rush Alzheimer’s Disease Center also did a study, published in the Archives of General Psychiatry in 2012, that showed that feelings of life purpose also seem to make a significant difference. Life purpose was defined as anything that gives people a feeling of meaning such as family relationships, church attendance, civic engagement, music or art—things people really care about doing. On a scale of 1 to 5 in terms of self-reported meaningful activities, participants with a score of at least 4 were almost 2.5 times more likely to be free of Alzheimer's symptoms than people who scored a 3 or lower.

And there was one last study I'd like to mention that was published in 2015 in a peer-reviewed journal called Maturitas by the Women's Health Ageing Project in Australia.It showed that these same protective effects could come from something as simple as babysitting a grandchild one day a week.

Five days a week had the opposite effect so you don’t want to take this too far... but think about this. Something that might be helpful to your parents or grandparents could be helpful for you! And it’s not just babysitting—it could be sharing a meal together, going to church together, it could be any number of things that people enjoy doing or things that make them feel useful in the family or in the wider world.

So I’d like you to think about what I shared with you today and start a conversation with your family or friends about it.

Alzheimer’s Disease is a really big problem.

The science doesn’t always match up with what actually happens with the disease.

We know that people who are less lonely and have a sense of life purpose seem to ward off the effects of the illness.

And there are ways that we might help each other with that.

Now I know that some of the things I’ve been talking about are not going to work for everyone—the statistics do NOT say that! And not everybody is going to be able to change long-standing patterns and ways of living. And not everyone has such a great relationship with their family that it's terribly appropriate to tackle that. But I’m going to leave you with a few final thoughts.

There are lots of lonely older people out there.

Developing new habits that bring us close to other people and things we love to do are way easier to do when we're young and could have a significant impact on our well-being as WE age!

Buchman, A. S. (2012). Effect of Purpose in Life on the Relation Between Alzheimer Disease Pathologic Changes on Cognitive Function in Advanced Age. Archives of General Psychiatry, 69(5), 499. doi:10.1001/archgenpsychiatry.2011.1487. Retrieved April 14, 2016 from http://archpsyc.jamanetwork.com/article.aspx?articleid=1151486.

External Beam Radiotherapy: Beta-Amyloid Plaque Reduction. Provided by the Beaumont Health System for an article by the Michigan Head and Spine Institute.Retrieved April 19, 2016 from http://www2.mhsi.us/Articles/external-beam-radiotherapy-beta-amyloid-plaque-reduction.html

In the last paragraph Dr. Weil said "Please bear in mind that in this study "twice the risk" is relative to the normal risk of developing Alzheimer's. Here's what relative risk means: assume that the normal risk is one in 100 people. Double the risk means that two of 100 people will develop the disease and the other 98 will not."

Fine, but 1 in 6 people in the U.S. have Alzheimer's Disease right now (about 14%) and the percentage rises as people age to 1 in 3 people getting the disease by the time they die (about 33%). Correct me if my math is wrong (that happens) but I believe if you double the risk you will get numbers ranging from 28% for the population as a whole and rising to 66% as people get older. That's a very significant statistic!

It makes a very big difference as people progress through their life cycle, and taking steps to shift these patterns in your life when you are still young, could make a major difference for your life as you age!